Facing the Challenges of Fluctuating Weight with Chronic Illness

Gaining and losing weight is a part of life. In my 28 years, my weight has fluctuated for several reasons, including puberty, hormones, dietary changes, and acute illness. During these weight shifts, I accepted that it was just how my body was at the time.

In the past, I’ve usually had some degree of control over my weight and body type. I knew the reasons for weight shifts and when I had to lose or gain it. But managing chronic illness and pulmonary hypertension has taught me that I don’t have as much control over weight changes as I once did. 

Living in a body that doesn’t seem to give me much control is challenging. In recent years, my body weight and shape have changed drastically. It is difficult both mentally and physically to see these changes in my body and feel the physical toll of weight loss. It also is mentally and physically challenging to try to restore lost pounds.

I don’t have much say about how and when these changes occur. It is a reminder that my body appears to be in the driver’s seat while my mind feels like the passenger. 

Mentally, it is hard to accept that I didn’t choose to lose weight. I didn’t choose to be unable to eat for almost a year. I also didn’t choose enteral feeding to obtain proper nutrition and energy.

In just a few short months, I lost over 10 percent of my body weight due to malnutrition. This weight loss made me feel mentally exhausted, depressed, and lethargic. Much of my day was consumed by thoughts of all the things I couldn’t do due to a lack of energy. Although I couldn’t eat orally during this period of my life, my brain forced me to think about food almost constantly. 

Physically, it was hard to look at myself in the mirror. It was difficult to see the dark circles around my eyes, which reminded me that my body was struggling to keep “hanging in there.” Seeing my rib cage when I changed to get in the shower always left me in tears. It was hard even to remember the period of my life when my body frame, which now seemed mostly bone, was filled out with muscle and looked and felt strong. 

Now that I am being properly nourished with the help of my GJ-tube and some soft foods, I have been able to restore some of the weight I had lost. Dealing with a changing body and gaining the weight back also has been difficult.

Gaining weight has helped my anxiety and depression because I feel like I have more energy. But my body is retaining more fluid as my tube feeding rate increases. With a quick increase in weight, my lung function worsens, my breathing feels more difficult, and hormonal shifts make my moods chaotic. 

With chronic illness, weight change can sometimes happen drastically, whether it’s losing too much in a short period or gaining it quickly due to medications, changes in metabolism, or nutritional requirements.

Dealing with a changing body is a challenge both mentally and physically. But looking at the ways weight gain and loss have affected my life helps me to make sense of what is within my control and what isn’t. 

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.